Lupus: A Patient's Perspective

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Guest: Sheila Murphy – Lupus Patient

Host: Dr. Linda Austin – Psychiatry

Dr. Linda Austin: I’m Dr. Linda Austin. I’m talking today with Sheila Murphy. Sheila is participating in a clinical trial, a couple of clinical trials, right?

Sheila Murphy: That’s correct.

Dr. Linda Austin: Sheila, you are, how old now?

Sheila Murphy: I am 42.

Dr. Linda Austin: Oh my goodness, you look so much younger than that. How long have you had lupus?

Sheila Murphy: I’ve had lupus, roughly, about 20 years.

Dr. Linda Austin: About 20 years?

Sheila Murphy: Yes.

Dr. Linda Austin: Would you say it’s been mild, moderate, severe? Has it affected your life much, or have you been able to do most of the things you wanted to do?

Sheila Murphy: It has affected my life. You have to get used to doing things not quite like you used; you have to modify.

Dr. Linda Austin: What have been your most significant symptoms with your lupus?

Sheila Murphy: Initially, I had a lot of joint inflammation, lost some weight. Those are the major ones that I can think of.

Dr. Linda Austin: Kind of stiffness and soreness in your joints?

Sheila Murphy: Exactly.

Dr. Linda Austin: I see. How long have been treated for your lupus here at the medical university?

Sheila Murphy: I have been coming to the medical university the whole time.

Dr. Linda Austin: Really? The entire time?

Sheila Murphy: Yes.

Dr. Linda Austin: Who have your doctors been here?

Sheila Murphy: Initially, I was seen by Dr. Silver. I’ve seen Dr. Bolster in Rheumatology. There was a doctor here, his name was Dr. _____ (1:32), and this was when Rheumatology was in the Clinical Sciences building. So, I’ve seen changes in that aspect, where it was in one building and you have to learn your way around and then go to the clinic in another area.

Dr. Linda Austin: Well, you’ve had some really awesome doctors, I know. Now, you’re participating in two studies. Let’s take them one at a time. What is the first one you participated in?

Sheila Murphy: The first one is the BLyS study. It’s a Phase III clinical trial where the medication that they’re using is infused. We’re hoping that it will help patients by easing some of the symptoms of lupus.

Dr. Linda Austin: Infused, meaning, you get an IV? Is that correct?

Sheila Murphy: That is correct.

Dr. Linda Austin: I see. When you say Phase III, that means it’s placebo-controlled? Maybe you’re getting placebo, and maybe you’re not?

Sheila Murphy: That is the possibility.

Dr. Linda Austin: Maybe you’re getting active medication?

Sheila Murphy: Correct.

Dr. Linda Austin: Do you have a suspicion as to which it is?

Sheila Murphy: The doctor asked me that question, Dr. Gilkeson. I said, I think I’m getting the placebo, and he asked my why. I said, well, you know, I don’t feel much different. When I started the trial, they had actually switched one of my medications, and the medication was helping. So, right now, I can’t really tell if it’s the new medication that they put me on versus the placebo.

Dr. Linda Austin: Now, in the way this trial is structured, when the study period is over, how long will it last, actually?

Sheila Murphy: The study is 76 weeks.

Dr. Linda Austin: A long time. At the end of the study, sometimes what they will do is put everybody on the active medication. Will that be true in this study?

Sheila Murphy: That is correct. Once they finish the first portion of the trial,

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